 |
| Photo credit: Moi |
But lately I’ve been wanting to talk about it openly. I’ve had a lot of feelings about a lot of related things and I want to be able to say something without feeling like I’m talking over someone else.
So I guess I’m going to talk about it now.
Back in October I took the post picture during the WDNB initiative. And then when time came to post it, I hesitated.
I looked at the picture, and I looked at the Internet, and thought am I ready to tell everyone? I’ve talked about my anxiety stuff before, but this always felt different to me somehow. Maybe because I wasn’t diagnosed until after I started Twitter stuff. Maybe because this was physical, and newish, and I still haven’t digested it emotionally some days.
Maybe because I’m starting to understand I may never fully digest it emotionally.
I wasn't ready then, and I'm not sure I'm ready now, but I’m just going to say it. I have rheumatoid arthritis.
For those who don’t know, which I’m assuming is most of you, the lowdown is this: rheumatoid arthritis is an autoimmune disease that causes my body to attack itself, particularly my joints and the lining between my joints. It’s a debilitating, incurable (thus, chronic) disease that causes chronic pain and usually affects people twice my age or older, but has also been known to attack many in my age group and even younger. I was diagnosed at twenty, but my symptoms started at nineteen. I’ll save the story for another day because this isn’t actually about that.
This is about the Miracle Cure trope.
There are many problems with the Miracle Cure trope, but the biggest, to me, is the insinuation that people who are chronically ill/disabled/neuroatypical can’t have happiness if they aren’t cured. This repetition of the happy ending = Miracle Cure is a punch in the stomach that says you aren’t whole unless you’re healthy.
What’s worse is that people believe it.
What made my diagnosis even more difficult for me, was many of my well-intentioned family members didn’t want to accept it. I can’t tell you how many times I heard something along the lines of “Don’t worry, we’ll find a way to make you healthy.” I can’t tell you how many arguments I had where I was told off for having a bad attitude when I said, “There isn’t a cure. I need to accept this.”
I’m not blaming anymore. I’m not complaining. I love my family and it just took time for everyone to come to terms with what was happening.
But a large part of the reason why that transition period was so rocky, and why those arguments were so hurtful was because we were back to the Miracle Cure that everyone was expecting. There was this message, over and over, of “you can’t be happy until you’re cured.”
Except I probably wasn’t going to be cured. Right now, at least, there isn’t a cure.
The Miracle Cure trope isn’t just something stupid we occasionally see in fiction. It’s a real, damaging thing that feels like a knife to the gut to those who are chronically ill/disabled/neuroatypical.
The Miracle Cure says, “it’s too hard for me to see you as Sick. I’d rather pretend you’ll be Healthy again soon.”
The Miracle Cure says, “thinking about you having an incurable condition is too scary. I’d rather pretend you’ll be Normal again.”
The Miracle Cure says, “you aren’t whole if you aren’t healthy, neurotypical, and able-bodied.”
The Miracle Cure trope hurts. And if I never see it again in fiction, or hear it referenced again in reality, it’ll be too soon.
Twitter-sized bites:
What's the big deal about the "Miracle Cure" trope? @Ava_Jae explains why it's so damaging on & off the page. (Click to tweet)
"The Miracle Cure trope isn't just something stupid we occasionally see in fiction." (Click to tweet)
Ava, thank you for illustrating how a Miracle Cure comes across to someone with an incurable illness. As someone with loved ones who suffer from incurable illnesses but has been lucky not to experience one herself, I definitely fall into the category of the person who wants ALL the miracle cures. You hit the reasons for it precisely with "it’s too hard for me to see you as Sick. I’d rather pretend you’ll be Healthy again soon" and "thinking about you having an incurable condition is too scary. I’d rather pretend you’ll be Normal again."
ReplyDelete"Scary" is downplaying it even. To be honest, I'm absolutely terrified of the pain my loved ones will/could go through without a miracle cure someday. And since I am inside my own head, I only see my side of it. I'd never think they can't be happy without a miracle, but having read this, I can be more conscious of what I say and how it might be understood.
You're so welcome, Laura. I'm really glad to hear the post was able to shed a little light on the (often unintended) insinuations behind what could seem like really innocuous "encouragement." I definitely understand why people, especially loved ones, try to focus on a Miracle Cure, but the truth is, for me at least, it's actually much more difficult emotionally to hold out for something that's currently impossible. The only way to really move forward is to accept the situation, then move on, but accepting is impossible if you're waiting for an elusive cure.
ReplyDeleteBeing diagnosed with autism, I needed to hear some of these words. Especially these (The Miracle Cure says, “you aren’t whole if you aren’t healthy, neurotypical, and able-bodied.”) It really struck deep. For a long time, people have tried to "fix" me, make me "normal" so I can be "productive" and live a full life. A life is a life, and I think people forget that nowadays.
ReplyDeleteWhenever I read stuff like this, I think of "Stumbling on Happiness" by Daniel Gilbert, in which he mentions a study where blind people and not-blind people (is there a good word for not-blind people?) were both asked how much money they would pay to maintain their vision. It turned out that not-blind people would pay WAY more money to ensure they could keep what vision they had than blind people would ever pay to see again. Gilbert's point was—the not-blind people couldn't imagine how they could be happy if something so big as their vision went away; blind people already knew that they didn't have to see to be content in life.
ReplyDeleteI think I've found the same true for me. I have asthma, which is manageable with prescription medicine—it never solves the problem, but it does mean I have a day-to-day solution that keeps me breathing. Still, for a long time, my mom resisted using that medicine, because she did want to find that "Miracle Cure" and she had a hard time with the idea that there wasn't one, especially because she was concerned about the prescription medicine. I think I can understand how she felt, but ultimately I'm satisfied with the daily cure, because I know that to some degree I can have a happy, normal life that still involves my disease, instead of an unhappy, normal life looking for something to help that doesn't exist. It's something I've learned I hope to bring to my writing someday.
Thanks for sharing this, by the way. It can be nervous-making to post such personal things like this, especially when they hit the emotions so hard. Definitely worth thinking and talking about, though!
This exact thing is why I'm so determined to write a mentally ill character into my fantasy world that treats her illness as just a part of her, a challenge, but also irrevocably who she is, neither a power nor a "weakness" and not apologizing for it. (Especially in a setting where there are no modern pharmaceuticals.)
ReplyDelete💜💜 Thank you for this. I actually have a similar post going up today! I'll come link it, if you'd like, when it's up. 😃
ReplyDeleteThis is really topical for me (even though you're talking about incurable diseases rather than terminal), as I've just been writing a story during Camp NaNoWriMo about a girl with terminal cancer. And while some part of me wants nothing more than for her to find a miracle cure, I feel like it's wrong, like I'm not doing the subject justice, and like it's offensive. I know that, as someone with anxiety and depression, I certainly feel offended when I read about characters with anxiety who magically become better when the first handsome guy walks along. It's not how life works. Sometimes you get dealt a few cards you wouldn't mind putting in your sock, but they're the cards you have to play with. You just have to make the best of it, and you can, and you will. It may take some effort at times (believe me, I know) but it's far from impossible.
ReplyDeleteOne thing i dislike on disqus is that everyone can see where i have commented and what i wrote, and this is a little bit frustrating.
ReplyDeleteoh, well, i’ll sleep on it tonight i guess!
Thanks for this post! Greetings from Greece!
Download Dark Sector PC Game
Visit our HTML tutorial
Car Mechanic Simulator 2015
Dungeons 2 CODEX Download For PC
Dirt Rally Early Access Cracked Download
State of Decay Year One Codex PC
Black Mesa Early Access Cracked 3DM
Star Conflict Dreadnoughts Download
Link is here: http://kirabudge.weebly.com/my-blog/on-alternative-medicine
ReplyDeleteThank you so much for this post! I relate to it more than I can express here. When I was fifteen, I was diagnosed with a form of arthritis called ankylosing spondylitis. Basically everything you described in your post, with the added bonus of the vertebrae in my spine fusing together. It affects so many aspects of my life, including writing--after all, when your body is exhausted from fighting against itself, it's hard to do much of anything. Of course, I live with it; when there's no cure, all you can do is move forward. What those in the "Miracle Cure" camp don't understand is that I *am* normal. I *am* happy. I rarely talk about my disease, but whenever anyone finds out about it, they're shocked because I (usually) don't even let on that anything's wrong. That's where "invisible" diseases get their name, right? I'm a naturally happy, outgoing person; who would ever guess? On particularly bad days, when my stiffness is a little more obvious or I haven't taken my medicine, people do notice, and they get very concerned. I appreciate that they care, but it hurts when they think I need (or want) special treatment. I think these kinds of things hurt even worse than the disease itself. People often try to minimize the pain, even, saying things like I'm too young or I'm out of shape and just need to condition myself. Even my insurance provider refused to pay for my medication for several years because I was "too young" for my disease (I laugh about that now, but dang, it was sure expensive!!).
ReplyDeleteBeing chronically ill is a difficult position to navigate. It hurts when people minimize what my body and mind are going through, and I want those people to understand that the disease is very real. But at the same time, I don't want people to think I need a cure to be whole. To be perfectly honest, I feel *more* whole because of my disease! Being chronically ill has taught me so many lessons in patience, humility, endurance, compassion, the list goes on. This disease has contributed a lot to who I am today, and I *like* who I am. No cure can make me more *me* than I already am.
Thanks again for your post. It takes a lot of courage to talk openly about something like this, but know that you're not alone. Life is awesome, even if it hurts. :)
I ... don't know what to say, which is why it's taken me so long to write a comment even though I read and shared on Twitter yesterday. This piece is really moving (and this coming from someone who hardly ever shows emotions when reading/watching stuff), but I'm acutely aware of just how uninformed I am about some things. I call myself something of a scientist, but I've never thought about the other side of all the medical terms I study for interest. And reading the other comments, everyone else seems to have struggled through this, and again, acutely aware of how privileged I am. All the hugs to everyone who's had to fight against their disease and societal perception.
ReplyDeleteI don't think I'll ever write a Miracle Cure trope. I can't remember writing one of these before, but I definitely will not from now on. One thing that I'm thinking about right now, though, is my other identity as a semi-scientist -- I hope to go into biomedical research someday, so finding the so-called Miracle Cure might well become my goal. (Even if most medicines are hardly so perfect.) To balance that optimism with the acceptance of patients as they are and helping them to adapt to a life that doesn't ignore their condition -- it's difficult, but it's important in light of my dual identity.
So basically, thank you so much for this really thought-provoking post.
You're welcome, Kira! And what great timing! Thanks for the link. :)
ReplyDeletePerfect! Thank you!
ReplyDeleteThank you so much, Inge. I hadn't thought of it applying to terminal illnesses, but I think you definitely make a fair point. And I also definitely agree about the magically cured mental illnesses—that's another frequently used one and it can be very frustrating to read. But in the end, you're right—when you have to deal with any sort of medical condition, whether it's physical, mental or emotional, you really do have to learn how to just make the best of what you've got. And it's difficult at times, but absolutely not impossible. :)
ReplyDeleteThat sounds so great. And like something I would love to read. :)
ReplyDeleteOh wow, thank you, David! I'm so happy to hear this post really resonated with you. It can be frustrating how people—especially people we're close to—can sometimes be hurtful with their words, actions and assumptions. Sometimes good intentions can backfire quickly.
ReplyDeleteYou're welcome, Heather! It was definitely nervous-making, but I'm glad I did. :) And thanks for such a thoughtful comment.
ReplyDeleteThis is not my area of expertise, but I think a better term for people who aren't blind would be "seeing" or "able-bodied." There may very well be a better term than either of those that I'm not aware of, though. Either way, that's a really interested (and not surprising to me, at least) example with a great point, so thank you.
I'm glad to hear that you found a solution that works well for you. Asthma can be scary (I have a couple family members who are asthmatic), but medication can absolutely allow for a happy, regulated life. :)
I love this so much, Nathan. Thank you for sharing. Seriously.
ReplyDeleteI definitely can relate to a lot of what you described regarding how people treat it and navigating being chronically ill and young yourself. Before I was diagnosed, I can't tell you how many times people told me I was just out of shape—like we don't know the difference between feeling out of shape and actually being in pain. I do think, however, that a large part of the reason people minimize the pain (whether they intend to or not) is because it's easier for them to think it's not so bad to alleviate worrying and guilt. (Plus, if it's because we're out of shape, then it's our fault so it won't happen to them.)
And the "too young" thing...gahhhh. Thankfully my insurance never turned on me because of age, but I can't tell you how many times I've heard "you're too young" from medical professionals. It can be very frustrating and hurtful, especially when you hear it a lot.
I really love what you said about what being chronically ill has taught you. I hadn't really thought of it that way, but being chronically ill absolutely does change your worldview and how you handle things. I'll have to think more on that.
Finally, you're welcome! It was definitely scary to post this, but I'm really glad I did—the outpouring of support has been really touching and I'm glad I'll be able to talk about it openly now. And I agree—life definitely is awesome, even when it hurts. :) *hugs*
As a 20 year survivor of RA, the one thing along the "miracle cure" that drives me nuts is that it's somehow one's fault in having this disease. Not to mention the special dose of "Did you try this *newfangled organic fruit pipe-dream*? Did you try that *untested supplement full of unrealistic hopes*?" And then when you don't, or it didn't work (gluten free did nada, while my RA appears to be triggered by weather more than anything), they kind of regard you as some sort of failure who asked for it. It's important to find a new normal and establish the limits of how much this disease is allowed to impact your heart and mind on a daily basis. If anything, I've found that my disease has made me a stronger person, inside and out. Sometimes, it even feels like a gift. It gives me motivation to defy the odds. I view it as though we are rendered no longer ignorant as a result of this disease. In my eyes, this makes us far more whole than other people may ever hope to become.
ReplyDeleteYou're so welcome, Alyssa! I really appreciate the thoughtful comment. I don't think many people set out to write a Miracle Cure trope, they just don't realize it's a thing...and a hurtful one at that. Which is why I think it's important to bring up topics like this and talk about them—after all, if no one talks about them, we can hardly expect things to change.
ReplyDeleteYes. Yes yes yes.
ReplyDeleteI've definitely seen a lot of deflection of responsibility, which is what you described in the first part of that comment. I understand, logistically, why people try to (intentionally or not) put the blame on us for being sick (because if it's somehow our fault, then it won't happen to them), but it can be extremely frustrating and hurtful. And those suggested "cures" can be irritating to hear over and over about as well, especially because they're often suggested in place of medication, which leads to shaming people for taking medication, which is another level of gross. Interestingly, I do find that diet has helped...but not necessarily with RA. It's funny, because I tried the diet thing hoping it'd help minimize some flares and instead found it really helped with anxiety and really bad spring allergies I used to get. Go figure.
At any rate, I do agree that finding a new normal is important. I'm not sure I've reached the point where I feel that having RA has made me a better person yet, but I do think it's made me a stronger one, and certainly a more aware one, particularly of tropes like these, and ableism, etc. Getting chronically ill is a tough way to learn anything, but my diagnosis has definitely kicked off quite a bit of self-education, which is something I'm happy about.
Thanks for sharing your experience, Kris! I really appreciate it.
I was recently diagnosed with a chronic illness, and what the "miracle cure" idea has done for me is put me in a stage of denial. I am, in effect, mourning the loss of the idea of myself as a healthy person, but so long as I haven't tried X or Y miracle cure, I haven't tried every thing, so maybe the disease will go away or I'm not really sick after all. I am, however, after a year of various efforts, nearing the end of my ideas *and* my ability to pay for all of these magic cures... after about a year. But I still feel like I ought to keep trying. 'Cuz. Miracle Cure. Maybe all along I just needed Omega 3s / to quit gluten / to try hydrotherapy / meditation (or something)?
ReplyDeleteI can empathize. Try to convince people that 'chronic fatigue' is actually a thing when you're 23.
ReplyDeleteGlad you talked about it. If people talked more online about stuff like this, there wouldn't be as much fear.
Thanks for your honest post. I have had a chronic muscular condition for over twenty years and have come to accept that all I can do is manage it and be tolerant towards my body, rather than let sink into despair and let chronic pain derail my everyday life, (I don't always succeed in that!). Fortunately writing is an occupation that doesn't require a top shape physique! I think people are well-meaning in their hopes for a cure for pretty much everything - but it isn't very helpful or empathic.
ReplyDeleteSo I definitely sympathize with you. The mourning the loss of your healthy self is something that, even three years later, I still sometimes struggle with—especially when I'm having a not so great day or run across something I want to do, but can't. And I definitely know what you mean about the Miracle Cure idea just encouraging denial—I think that's very much what people closest to me dealt with, and when I did try different "cure" ideas and they didn't work, it was like mourning all over again.
ReplyDeleteSo yeah, I definitely get what you're going through. It's not an easy thing.
I do hope that talking about it and bringing more awareness may help...somehow. Less fear, less stigma, less misinformation, maybe? One can only hope.
ReplyDeleteI also feel for you with the chronic fatigue thing. When you're young and chronically ill, people mistakingly believe being young = being healthy and energetic, which unfortunately isn't the case for everyone.
You're welcome! And thanks for sharing your thoughts and experience. I do agree that most of the time, at least, people are well-intentioned when they mention Miracle Cures. But unfortunately it doesn't have the intended effect as you said.
ReplyDelete